Day 55 since Payson was diagnosed with Acute Lymphoblastic Leukemia.
I remember on that day, as we were sitting in Exam Room 9, after the doctors came in and confirmed that Pace had cancer, they left, and we were alone – me and Wendy and Pace – and I told Wendy that our life just changed. And it did. Our life changed on May 3, 2017, and it will never be the same.
Every single day since has been heavy. Every one. However, there are glimpses of joy all the time, there’s days that are mostly sunshine, there’s lots of just life as usual. And there are days that are the worst of my life, made even worse by the realization that I can’t even really identify why they’re so dark, so full of despair . Leukemia sucks. It just does.
So, while our life changed forever on May 3, 2017, it didn’t stop. I remember on May 4, 2017, I woke up and was sitting on the couch in our front room, crying to myself and trying to make sense of things, and the sun came up. There wasn’t anything special about that sunrise, no unique beauty or anything, but it’s the best sunrise I’ve ever seen.
Life continues on, and you go on with the rest of the world, negotiating each day, being more careful in what you say, more sincere in your relationships, less severe in how you judge others, broken in some unhealable way but also unbreakable in a very delicate way. And all the time, through the darkness and worry and uncertainty, you learn new depths of love and new appreciation for compassion and new hope. You learn authenticity. You learn to value what’s valuable and wash away what’s not.
And you also talk about bodily functions waaaaayyyyyy more than is appropriate, but whatevs.
So now, we watch people that we love struggle with things, and it gives us perspective. For as serious as Payson’s deal is, there’s so much else out there that’s full of darkness and despair. There are no comparisons, but we’ve all got stuff. Everybody. Perspective isn’t about saying you’ve got it better or worse than other people, it’s about saying you’ve got your stuff and you’re damned sure to be equal to it and you’re going to do your best to help other people be equal to their stuff too.
Three things matter – the people you love, the experiences you have, and the knowledge you gain. And that’s it.
So, up yours, Leukemia, but thanks for the unspeakably essential lessons for the 55 most recent days and the countless ones to come.
Thanks, You Blowhard, But What About Payson?
Payson is so good. He’s the happiest person in our house almost all the time. He’s unfazed and he has sparkly eyes. The last few weeks have been so good for him – so much energy, so many fun things, so many kind people continuing to provide so much support. He’s been a pretty close to normal 7 year old for the last bit, and I love this little bald man so much that sometimes I swear I’m smothered by it.
During the last week, he went and saw Brigham in a show, worked a friend over in Ice Cool, successfully begged another friend to make his favorite dessert, performed a show at summer camp, took a passing interest in the bills that have started rolling in, started trying to earn money by selling visitors gumbleballs from his gumball machine, flirted with girls 10 years older than him, and got his dance moves back. And he also went to Lagoon-a-Beach, which is a touch-and-go proposition for even the hardiest human, but we thought the promise of a tiny bit of summer fun was worth the surety of the resulting severe undercarriage rash and explosive diarrhea. Yay summer!
Because people keep asking, here’s an update on Payson’s treatment so far and what we expect going forward if things continue to go well.
On Day 1, Payson started an active treatment schedule that looks like this:
Induction (1 month)
Consolidation (1 month)
Interim Maintenance (2 months)
Delayed Intensification (2 months)
Interim Maintenance (2 months)
So, he’s finished with Induction and Consolidation. He’s through 2 months of an 8 month schedule with frequent hospital visits and chemotherapy. So far, it’s been a visit every week. For Interim Maintenance, starting next Wednesday, he will have visits every 10 days or so. Five treatments, 50 days. They expect his energy levels and immune system to be pretty good for a lot of this phase.
From what we understand, Delayed Intensification will be pretty intense, somewhat like Induction during the first month. And then the last Interim Maintenance should be somewhat similar to these next two months.
After that, he’ll have pills he continues to take on the daily, and something like monthly visits to the hospital. That will last until three years from his treatment starting, or May 4, 2020. Then less frequent visits, less pills, until he’s officially free and clear at five years after treatment starting, or May 4, 2022.
Typing this all out sucks, but also, thank God and science for a treatment schedule that creates such promising outcomes.
Treatments start again next week, and we’ll go on giving updates here.
Also, we think our friends have questions that we never quite get around to answering, so we want to do a Mailbag blog, where we will answer the questions we know the answers to and make up the answers to the rest.
If there’s some question you have about this whole thing, or about my physique and exercise tips, you’re welcome to text it to me (801-859-7799) and we’ll answer it. No question is too stupid, other than the seriously stupid ones. We feel like the more questions we can answer, the better for everybody to be more informed about this sucky thing, and the less we’ll have to answer in our super boring way when we run into you at WalMart!
Lots of uphill path ahead. Thanks for sticking with us, for kicking with us.